24224 Physicians Caring for Celiac Patients do not Routinely Recommend Screening of First-Degree Family Members - Celiac.com
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Physicians Caring for Celiac Patients do not Routinely Recommend Screening of First-Degree Family Members

Celiac.com 01/25/2016 - The latest research says that most fail to recommend celiac screening for first degree relatives, although some doctors are better than others.

Photo: Wikimedia CommonsIn a recent study, researchers tried to get an idea of just how frequently celiac disease patients receive a physician-issued recommendation for first-degree relative screening.

The research team included Abhik Roy, Colin Smith, Constantine Daskalakis, Kristin Voorhees, Stephanie Moleski, Anthony J DiMarino, David Kastenberg. They are variously associated with the Division of Biostatistics, the Division of Gastroenterology and Hepatology, the Department of Medicine at Thomas Jefferson University, Philadelphia, Pennsylvania, USA, and the National Foundation for Celiac Awareness in Pennsylvania.

For their study, the research team conducted a 12-question survey assessing whether celiac disease patients receive a physician recommendation to screen first-degree relatives for celiac disease, and the impact of such a recommendation, was validated with outpatients in a university gastroenterology practice, called "University"patients. The 12-question survey was then distributed online to members of the National Foundation for Celiac Awareness (NFCA).

The team then collected results over 3 months, and used univariate analysis to compare cohort means, and to assess the association between demographic and diagnostic factors and first-degree relative screening recommendations.

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A total of 87 University patients participated in the validation phase. Test-retest reliability of 4 key survey questions was high, with a Kappa coefficient >0.80. The team based its main analyses on data from 677 NFCA and 82 University respondents. Most respondents were female, with an average age of 45 years.

Nearly 80% of University patients received recommendation for celiac disease screening for first-degree relatives, compared with just 44% of the NFCA respondents (p < 0.001).

Of patients who did receive a screening recommendation, from either group, 98% percent discussed the recommendation with family members, leading to celiac disease screening in 71% of University patients, and 79% of NFCA respondents, and to a celiac disease diagnosis in 18% of University patients, and 27% of NFCA respondents.

Physicians commonly fail to mention to their celiac disease patients the importance of screening first-degree family members. Because such screening is so effective, the researchers are suggesting that making such screening recommendations may increase the diagnosis of celiac disease in high risk individuals.

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Yes but...

I didn't read that far. Yikes... A hefty dose of perspective in that one. For anyone reading this is the post:

Hi! I'm new to the Celiac world. I have been gluten free for around seven months, but still seem to get glutened on a regular basis. I have been sick since January '16 and think that is when it triggered, but I didn't realize until October what it was. By that time I was pregnant with my little boy who is due in June. I also have an almost 4 year old daughter. I am really torn and wondering if I need to really be tested? I have very strong suspicions that I am a true celiac because my aunt has been diagnosed. Part of me says it doesn't matter, just live gluten free and assume you are, but the other part says I need to get tested so I know if my kids are at risk. So far my daughter is fine. She was grain free until after her first birthday, I plan on doing the same with my son. But I also don't want them to suffer the way I have. What would you do? The reason I don't want to get tested is I don't want to start eating it again and feel terrible while I have little kids, last year was so hard and I just want to get strong again. I also plan to bf for a few years and don't necessarily think it's a good idea to eat gluten while bf right? Thank you!

Welcome too! Sorry to hear you're suffering now. If you can nail the diet you should improve. You should also think about vitamin supplements. There's a good chance that you're suffering from one or more deficiencies as a result of the affects of celiac on your intestine's capacity to draw nutrients from your food. A good multi vitamin is a must, just make sure its gluten free and see if your doctor can refer you to a dietician as Lochella's has.

Oh I had heard his name and read some stuff about him but hadn't come across this video! Thanks!!